ITP Support Association

Platelet drop while on steroids. Is this normal

Newly diagnosed ITP . Hemotologist put me on dexamethasone 4 day and count up to 120000. I then crashed to zero 3 days later. Did another 4 day pulse and went up to 36000 and crashed down to 5000 3 days later. Both crashes while off the dexamethasone. Hemotologist put me on 50 MG prednisone daily and went up to 16000 after 1 week but now I dropped to 10000 after 2 weeks on 50 MG. I never got off for the prednisone yet my counts have went down. Is this normal or to be expected? I know they typically should be higher than 16000 as prednisone should have kicked in by now. Please help. Thanks.

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Hi I am also on dexamethasone twice a week, I am also on N Plate. If I have been stressed or unwell my count drops but recovers . My count has never been as high as yours . If I get a count of 90 that's good for me and I have been diagnosed for over 2 years now.

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I was put on prednisone for an op many years ago and it crashed my platelets from 30 down to 0 so it was never used again. It works for some people and not others.

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I was put on steroids initially at the start of my treatment. My count rose dramatically over a period of one week peaking at 287, and then plunging down to under 30. I stayed on steroids for a few more weeks before being told that they weren't working as my count hardly rose above 30. My haematologist then tried IVig, Rituximab and finally romiplostim. The latter is the one that worked. All this was over a period of 6 months, until she was satisfied that at a count varying from 40 to just over 100 was deemed stable enough for me to remain on romiplostim, in the form of weekly NPlate injections. I ended up self injecting and all was fine until earlier this year when I decided to holiday in August in USA. As the injections have to be kept in a fridge I couldn't guarantee that I could do that whilst travelling around. So reluctantly after 3 years of romiplostim it was decided to try Eltrombopag tablets (Revolade) and they certainly worked! My count shot up to 487 in the first week, so I had to reduce the dose to 25mg daily. This has kept my count stable at over 100 and I can go off to America without having to worry if there is a fridge in the hotel room and facilities to freeze ice packs for plane journeys! I hope my story has given you a bit of an insight into the problems and ups and downs of having ITP, and that there is always hope if one form of treatment doesn't work for you. We are all suffering from the same thing but we all respond very differently to the many treatments on offer. If I were you I would give up on the steroids and ask your haematologist about the next course of action. Good luck and please let us know how you get on.

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Hello All, Thanks for your support regarding this question. I spoke to my hematologist this morning. He said for me to increase from my current dose of 50mg to 75 mg of prednisone from now until my next appointment on July 3. He said that he wants me to get another CBC before that (this Tuesday coming up..just to see if the added 25 mg of prednisone did a mini platelet boost). On July 3 he is going to put me on Promacta 75 mg and adjust if needed from there. I was diagnosed in May and did 2 dexamethasone 4 day pulses (up and then crash twice) followed by a change over to 50 mg of prednisone from June 7th until now. This is the only treatments that I have had so far.

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Promacta should work, good luck on that. I have gone through all those ups and downs from past 6 yrs. Steroids, Dexamethasone, Rituximab, IVIG and then Revolade/Promacta. I just stopped visiting Hematologists as nothing bought me above 80k. Revolade works little better but weaning off will bring back very low. Now am surviving with 5 to 15k along with lot of bruises. But that's okay, I am still leading pretty normal life. So don't worry, try few more treatments, if you are not able to bare side effects, try if you can lead normal life with low counts.

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